Raising a child with developmental disabilities has often been compared to an “unplanned journey,” taking you to places you never imagined you would go. After our son, Danny, was diagnosed with global developmental delays at the age of 13 months, I found myself learning a whole new vocabulary, meeting with many medical professionals and special-education teachers and aides. Not once did I think it would lead me to co-chair the first Special Needs Study Mission to Israel for 35 parents, professionals and teens/young adults with autism. The July 20-27 trip was spent visiting innovative programs for employment and residential options for young adults with special needs, with a focus on developmental disabilities.
And yet, it was somehow bashert (destined) that this trip would take place, that we would follow in the footsteps of our biblical ancestors to go out from where we live, searching for new ideas that we could bring back home. This trip — which included my longtime friend and co-chair Judy Mark, and was sponsored and staffed by The Jewish Federation of Greater Los Angeles — was truly the fulfillment of a personal dream.
I knew we had a special group when everyone (including the non-Jewish members of our delegation) showed up for our optional erev Shabbat services on the Tel Aviv beach next to our hotel, led by Rabbi Jackie Redner, rabbi in residence and chaplain for Vista Del Mar Child and Family Services. An Israeli woman with a scarf around her hair and a denim skirt came over with a siddur in hand, asking if she could join us, and, in the spirit of inclusion, we said yes. She had planned to say the prayers alone, along with her more secular mother, who had never before seen a coed group praying in shorts and tank tops.
These spontaneous bursts of inspiration and connection followed us for the next seven days. During one day of touring on our bus, the driver stopped to pick up his daughter, Shoshana, who was studying autism at Bar-Ilan University. Why had she chosen to study that particular subject? After her army service, she was selected by The Jewish Agency to work at Camp Ramah California, where she was assigned to help out with the Tikvah program for campers with special needs — the same camp where Danny happened to be, along with the sons of three of the other participants.
During a visit to Beit Ekstein’s employment program in Ra’anana, a young Iranian man with autism sought out Manijeh Nehorai, the director of Iranian-American Community Service Division of the Etta Israel Center in Los Angeles. The young man was so thrilled to converse with someone in Farsi, he became very emotional and started to cry; Nehorai tenderly hugged him, and they exchanged addresses.
Another person who wanted to stay in touch with us after the trip was Reuven, a 29-year-old man with intellectual disabilities from Netanya who is an Israel Defense Forces volunteer soldier at an army intelligence base near Tel Aviv. This special joint program of AKIM Israel (The National Association for the Habilitation of Children and Adults With Intellectual Disabilities), Sar-El (Volunteers for the IDF) and the Welfare and Social Services Ministry provides transportation training, army skills training and then two years of volunteer placement at an army base, where the participants proudly wear the Israeli army uniform. The program is called Shavim B’Madim, which in Hebrew means “In uniform, we are all the same.”
Reuven wakes up each day at 5:30 a.m. and takes the bus to arrive at the base by 7 a.m., where he works alongside typical soldiers, passing out uniforms and boots, and then organizing them when they are returned. His comrades told us that he is better at his job than others assigned the same duty because he is more motivated. That was definitely a two-hankie stop.
Two very interesting things happened as we toured the country from the north to the south, to Jerusalem and back to Tel Aviv. At first, everyone was hoping to find the perfect program that we could bring back to Los Angeles. Like many others on the mission, I was looking for something that was inclusive (meaning the participants had ongoing, engaging relationships with adults who didn’t have disabilities), had a communal feeling among the participants with special needs, and was in an accessible location where family members could easily visit.
Over the seven days, as we toured the 13 different programs, we saw that no single program was perfect. The pastoral Kishorit Kibbutz near Karmiel had 10 different microbusinesses on site, including breeding prize-winning schnauzer dogs and organic eggs, but it felt isolated from the rest of Israeli society (plans are under way to provide on-site housing for staff members and family members).
Israel Elwyn provides direct employment and housing services for more than 2,600 children and adults annually, yet the adults with different disabilities are housed together only with people who have the exact same diagnosis, so there’s no mixing of people with Down syndrome with people who have autism, for example (this, we were told, is due to government funding, not the organization’s wishes).
Aleh Negev, an amazing village in the Negev for children and adults with severe/multiple disabilities, was created by the charismatic Maj. Gen. Doron Almog, who led the famous Entebbe rescue and later had a son with severe developmental disabilities. The facility is built on the foundation of love and compassion, and has both residents and outpatients. We met an adorable 3-year-old boy with Down syndrome, who hugged me and my husband as if we were long-lost relatives. But when we heard that his family had abandoned him at birth, I felt very discouraged at the high level of stigma that exists in Israel.
Kibbutz Harduf in the Lower Galilee has a “community within a community” called Beit Elisha for 65 adults with developmental disabilities (with an overall kibbutz membership of 650) and has workshops in weaving, ceramics and papermaking as well as a bakery. But in asking questions, we learned that the Beit Elisha members mostly kept to themselves, interacting sometimes with the at-risk youth community also on the kibbutz, but with little connections to the typical kibbutz members.
During one of the mother-of-all bus trips (three hours getting back from the Negev to Tel Aviv due to road construction, accidents and traffic jams), we realized our mistake — we had to take the best elements of all the programs and forge our own unique vision. As the young, enthusiastic staff member at the Ayalim village in Yachini told us, “ If you want to get something done, you build it, and then get government funding.” That great combination of Israeli chutzpah and out-of-the-box thinking was contagious.
The other unexpected outcome was the degree to which our group bonded and became a community itself. After just one hot, sweaty day together on the bus, we knew too many details about each other — who didn’t like taking elevators, who needed an extra coffee or two to get through the day, and who was first in line to use the restroom (guilty as charged). On a deeper level, parents and professionals shared their frustrations, hopes and dreams. We all increased our sensitivity to our three young adults with autism who were there with their parents, recognizing them as unique individuals who happened to have special needs.
During our wrap-up, one of the participants said: “I don’t want to be too dramatic, but I am a different person than when we started. I’ve never felt a community before. … I’ve learned that anything is possible.” Amen.
Michelle K. Wolf is a nonprofit professional and special-needs parent advocate who has worked in the governmental and nonprofit sectors for the past 25 years. Her Jews and Special Needs blog is at jewishjournal.com/jews_and_special_needs.